The Times Australia
The Times World News

.
Men's Weekly

.

'I’m not going to be cured'. How breast cancer awareness and support sidelines people with metastatic disease

  • Written by Sophie Lewis, Senior Lecturer, University of Sydney, University of Sydney
'I’m not going to be cured'. How breast cancer awareness and support sidelines people with metastatic disease

There have been incredible advances[1] in breast cancer diagnosis and treatment in recent years. And stories about celebrities who have “beaten” breast cancer continue to be a source of inspiration for many people.

However, this emphasis on fighting, beating and surviving cancer shuts out the voices of those who will not survive. That is, the many people diagnosed with incurable, life-limiting metastatic breast cancer, which kills nine Australians every day[2] or nearly 3,300 people[3] a year. Yet an estimated 10,000[4] Australians are living with the diagnosis.

Being diagnosed with metastatic breast cancer, as one of the authors has been, means ongoing treatment to live as long, and as well, as possible. It also means an ongoing need for emotional and practical support.

However, society, health-care professionals, cancer advocacy organisations, even a patient’s closest family and friends, can struggle to understand what it is like to live with an incurable and life-limiting cancer and how best to provide support.

Why is there so little awareness?

Metastatic breast cancer[5], also called stage four breast cancer, is the most serious form of breast cancer. Unlike early breast cancer that is contained within the breast or nearby lymph nodes, metastatic breast cancer has spread to other parts of the body, most often the bones, lungs, liver, or brain.

There is no cure for metastatic breast cancer despite decades of advocacy, funding and research. Treatment continues for as long as it helps to control the cancer and is tolerated by the patient. Median survival is two to three years[6], although newer, novel treatments mean some patients are living much longer.

As a society, we can be uncomfortable talking about and facing death[7]. When it comes to cancer, we usually prefer focusing on good news stories. These narratives are often perceived to be better for fundraising and are reassuring for people newly diagnosed. But they fail to represent[8] the diversity and reality of cancer experiences.

Despite considerable research into people with non-metastatic breast cancer, relatively little[9] is known about Australians with metastatic breast cancer.

Read more: 'The dirty disease' – both smokers and non-smokers get lung cancer. They face stigma on top of illness[10]

Feeling silenced and unsupported

Through our research[11] we wanted to better understand people’s experiences of metastatic breast cancer. We interviewed 38 participants from around Australia with diverse experiences of metastatic breast cancer. Participants were recruited through breast cancer and community organisations.

We found messages and public campaigns about cancer survivorship, which emphasise hope and positivity, drowned out the voices of those with metastatic breast cancer. The focus on “success stories” about surviving breast cancer made some people feel like it was their responsibility to “beat” cancer. If they didn’t, it was their own fault. As one interviewee told us:

I react quite badly to all the, ‘we’ve had breast cancer and we beat it and we’ve survived. Aren’t we fantastic.’ There’s almost a feeling if you haven’t beaten your breast cancer you haven’t tried hard enough.

Silence around metastatic breast cancer was common in research participants’ experiences. It prevented many from connecting with others and to the support they needed. It even affected relationships with those closest to them leaving them feeling misunderstood:

They don’t realise I’ve got to be on treatment forever. I’m not going to be cured. I think society thinks everything can be fixed; metastatic breast cancer actually can’t be fixed.

Sharing deep fears and worries about their life expectancy can leave people with metastatic breast cancer feeling drained rather than supported. Many participants reported having to support and shield family, friends, acquaintances and work colleagues from the reality of their terminal diagnosis.

You hide how you feel because you don’t want to be avoided […] You put on that big, happy face. But like an onion if you peeled the layers away, you’d find out what’s going on.

While many participants wanted to join a community of people with metastatic breast cancer, they struggled to know how to find one. Those who did, emphasised how invaluable it had been:

Being able to identify with and know that these people really get me is a huge relief and it reduces the isolation.

These findings echo previous research[12] demonstrating people with metastatic breast cancer have higher support needs than those with non-metastatic breast cancer. And these needs are less likely to be met[13] by health care, support services[14], family or friends.

Two women join hands in supportive gesture.
People with metastatic breast cancer must be represented in advocacy and support efforts. Shutterstock[15]

Read more: Poor, middle-aged Australians are more likely to die from cancer – and the gap is widening[16]

A new path

Being diagnosed with metastatic breast cancer can be terrifying, lonely and create significant support needs. It is essential people with metastatic breast cancer have their voices listened to[17] and their needs met.

Next steps should include:

  • improving data collection by cancer registries[18] so we know exactly how many people in Australia have metastatic breast cancer

  • increasing representation of people with metastatic breast cancer in advocacy, support organisations and research

  • nationwide access to peer-to-peer programs and professionally led metastatic breast cancer support groups.

We must ensure people with metastatic breast cancer are the ones to speak to their experience and needs. As a colleague with metastatic breast cancer said:

I read an article written by an early-stage breast cancer ‘survivor’. It felt like someone describing winter when they had only ever experienced autumn.

If you or someone you know has metastatic breast cancer, these organisations may be able to support you or connect you with others with the same diagnosis:

The authors would like to thank the members of Breast Cancer Network Australia’s Metastatic Breast Cancer Lived Experience Reference Group for their review of this article.

References

  1. ^ advances (www.cancer.gov)
  2. ^ which kills nine Australians every day (www.aihw.gov.au)
  3. ^ 3,300 people (www.aihw.gov.au)
  4. ^ estimated 10,000 (www.bcna.org.au)
  5. ^ Metastatic breast cancer (www.breastcancer.org)
  6. ^ two to three years (onlinelibrary.wiley.com)
  7. ^ talking about and facing death (theconversation.com)
  8. ^ represent (onlinelibrary.wiley.com)
  9. ^ relatively little (www.bcna.org.au)
  10. ^ 'The dirty disease' – both smokers and non-smokers get lung cancer. They face stigma on top of illness (theconversation.com)
  11. ^ research (onlinelibrary.wiley.com)
  12. ^ previous research (www.bcna.org.au)
  13. ^ less likely to be met (www.bcna.org.au)
  14. ^ health care, support services (bmchealthservres.biomedcentral.com)
  15. ^ Shutterstock (www.shutterstock.com)
  16. ^ Poor, middle-aged Australians are more likely to die from cancer – and the gap is widening (theconversation.com)
  17. ^ voices listened to (ascopubs.org)
  18. ^ improving data collection by cancer registries (bcna-dxp.azureedge.net)

Read more https://theconversation.com/im-not-going-to-be-cured-how-breast-cancer-awareness-and-support-sidelines-people-with-metastatic-disease-215458

Times Magazine

Effective Commercial Pest Control Solutions for a Safer Workplace

Keeping a workplace clean, safe, and free from pests is essential for maintaining productivity, protecting employee health, and upholding a company's reputation. Pests pose health risks, can cause structural damage, and can lead to serious legal an...

The Science Behind Reverse Osmosis and Why It Matters

What is reverse osmosis? Reverse osmosis (RO) is a water purification process that removes contaminants by forcing water through a semi-permeable membrane. This membrane allows only water molecules to pass through while blocking impurities such as...

Foodbank Queensland celebrates local hero for National Volunteer Week

Stephen Carey is a bit bananas.   He splits his time between his insurance broker business, caring for his young family, and volunteering for Foodbank Queensland one day a week. He’s even run the Bridge to Brisbane in a banana suit to raise mon...

Senior of the Year Nominations Open

The Allan Labor Government is encouraging all Victorians to recognise the valuable contributions of older members of our community by nominating them for the 2025 Victorian Senior of the Year Awards.  Minister for Ageing Ingrid Stitt today annou...

CNC Machining Meets Stage Design - Black Swan State Theatre Company & Tommotek

When artistry meets precision engineering, incredible things happen. That’s exactly what unfolded when Tommotek worked alongside the Black Swan State Theatre Company on several of their innovative stage productions. With tight deadlines and intrica...

Uniden Baby Video Monitor Review

Uniden has released another award-winning product as part of their ‘Baby Watch’ series. The BW4501 Baby Monitor is an easy to use camera for keeping eyes and ears on your little one. The camera is easy to set up and can be mounted to the wall or a...

The Times Features

Running Across Australia: What Really Holds the Body Together?

How William Goodge’s 3,800km run reveals the connection between movement, mindset, and mental resilience As a business owner, I’ve come to realise that the biggest wins rarely com...

Telehealth is Transforming Healthcare Services in Australia

It has traditionally not been easy to access timely healthcare in Australia, particularly for people who live in remote areas. Many of them spend hours on the road just to see a...

Launchd Acquires Huume, Strengthening Creative Firepower Across Talent-Led Marketing

Launchd, a leader in talent, technology and brand partnerships, has announced its acquisition of influencer talent management agency Huume from IZEA. The move comes as the medi...

Vietnam's "Gold Coast" Emerges as Extraordinary Investment Frontier and Australian Inspired Way of Life

$2 Billion super-city in Vung Tau set to replicate Australia's Gold Coast success story A culturally metamorphic development aptly named "Gold Coast" is set to reshape Vietna...

Choosing the Wrong Agent Is the #1 Regret Among Aussie Property Sellers

Selling your home is often one of the largest financial transactions you’ll make, and for many Australians, it’s also one of the most emotional. A new survey of Australian home se...

Travel Insurance for Families: What Does it Cover and Why it’s Essential

Planning a family trip is exciting, but unexpected mishaps can turn your dream vacation into a stressful ordeal. That’s where travel insurance comes in—it’s your safety net when ...